Towards a national plan of action for rare diseases

May 05, 2017

Rare diseases represent a particular challenge for research. "Given the scarce research funding currently available for rare diseases, charity projects and fund-raising initiatives by research organisations set up to research these diseases and to establish more targeted diagnosis are absolutely essential," says Reginald Bittner in his role as Vice President of the "?¶sterreichische Muskelforschung" research association. "It is important to raise awareness in all areas, and we want to do this through our congress," says Voigtl?¤nder. "One ideal goal would be a centre for rare diseases at the MedUni Vienna, where patients could be looked after and research carried out into their conditions across numerous disciplines. There are already several of these centres in Germany."

By the end of 2013, there is set to be a national plan of action for rare diseases in every European member state, following an initiative and the recommendation of the EU. In this context, the MedUni is cooperating closely with the national coordination centre for rare diseases, which was set up in January 2011 at Gesundheit ?¶sterreich GmbH and which acts, amongst other things, as an information hub for clinicians, scientists, sufferers and their relatives.

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